Learning to Breathe Again: Part 1

This is the eleventh part in sharing my personal experience of battling ill health.

Continuing on from My Time in Intensive Care: Part 2.

I opened my eyes and realised Mum and Jill were no longer in my room. I looked at the nurse and mouthed, “What happened?” She replied, “We think you had a reaction to the medication”. I just stared at her, bewildered. I mouthed, “Where’s Mum and Jill?”, the nurse replied, “Outside, do you want me to go and get them?” I nodded.

Seconds later, they came back into the room. Mum had been crying, which worried me. Again, I mouthed, “What happened?” Mum replied, “Your eyes rolled back and your arms were flailing, like a small seizure”. I started to cry and Mum gave me a hug.

Throughout the next several days and weeks, whenever I nodded off and suddenly woke up, I would panic and think I’d had another seizure, then the nurse would rush over, I try and ask if I’m OK, the nurse would then reassure me. It was a long, continuous circle. I was too scared to go to sleep, and very anxious if I suddenly woke up. Even with visitors, I would need reassurance. I was beyond petrified of having another seizure, and even to this day, I still get scared.

Despite the very disrupted sleep pattern, I continued to make small improvements. Ewan came to see me, while he was there, I was transferred into the recliner. I really wanted to try and drink, but I was still sceptical after the last time. I was offered a syringe of lemon squash, I had never tried it before but as soon as I finished the first syringe, I wanted more! I’ll never forget the first taste of lemon squash; it was like having a drink for the first time.

I could not get enough of it, I ended up having nearly 3 syringes, thankfully I didn’t throw it up!

Although I was making small improvements, I was still coughing and was constantly hot. I needed the fan on non-stop, if someone turned it off then I would tell them to put it back on. Manners went out the window when I was drenched in sweat. Even if I nodded off, I could sense if someone had turned the fan off, so I would instantly wake up and point at the fan so the nurse would put it back on again. Demanding even when I couldn’t speak.

I still had no idea that I had pneumonia, with all the coughing I just assumed it was a bad chest infection.

I was moved to a smaller ward with 3 bays and a side room. It seemed to be more quiet, ironic considering I have hearing difficulties, but you get my drift. I thought I would prefer less people about, but it made time drag on even more.

The next day, I had physio. This was the first session where I tried to sit up, with 3 physio assistants. This was also the first session where I realised, I couldn’t sit up by myself without a lot of support. I had no control or sense of balance whatsoever. I only managed a few seconds before I really struggled to breathe and felt very dizzy. They helped me to lay back on the bed and then manoeuvre me using the sheets.

Later on, that day, I was moved to the ward below, it was the exact same layout as the one I had just came from, which confused me. Then again, it doesn’t take a lot to confuse me.

By this point, I was no longer on any sedatives so I was very aware of myself and my surroundings. The first night on this ward seemed to be OK, I think physio had completely wiped me out so I did have a long sleep. I kept waking up during the night but I wasn’t overly distressed.

After being washed in the morning, the nurse wrote on my whiteboard, “As you’ve been improving, we want to try and wean you off the ventilator. If you become too tired and find it difficult, then we will put the ventilator back on”.

I didn’t feel ready, I’d been dependent on a breathing tube, oxygen masks, and ventilators for what seemed like forever, but it was actually 3 weeks. I admit, I felt more aware of things but I still felt very unwell. I was very hesitant but if they had been closely monitoring me and I’d been improving, then maybe I was getting better. I trusted them so I agreed.

The first time, I lasted 2 hours without the ventilators. Boy, did I know about it! I thought I couldn’t get any hotter than before, but damn! I was coughing so often that I lost count how many times they had to clear my tracheostomy tube. This was also when I started to realise how ill I had been, the amount of times they had to clear my tube, which basically collected all the crap from my chest. That really shocked me, and still does.

Tests for Mitrochondrial Disease were ongoing, Mum had to have a blood test which would show, if anything, that I could have inherited. I just had to wait for someone else to be tested.

With being constantly hot and sweaty, I hated how my hair felt and looked. One afternoon, a nurse washed my hair and I genuinely felt like I was being pampered! Head massage and a thorough wash, it was lovely. I ended up falling asleep because the head massage was so nice. I could really do with another massage, especially my neck and shoulders.

Mum came to see me but I could tell she wasn’t feeling well, she was more tired than usual, and kept nodding off. I’d been struggling with being off the ventilator that day and I thought I was going downhill again. I was convinced I was dying again. The anxiety of it all made me really tired so I fell asleep not long before Mum had to leave. I panicked when I woke up later that night, realising Mum had gone and I didn’t get to say bye to her.

I was very upset and the nurse spent ages reassuring me that Mum did give me a hug before she left. After how I had been that day, and feeling really anxious, I convinced myself that I would never see Mum again.

The next day seemed to drag, I wondered where Mum was as it was nearly 6 in the evening. ‘Maybe she’s had enough of seeing me’, I thought, I felt really low again and had quite a lot of horrible thoughts in my head. It was hard not being able to talk, about how I felt, purely because I was still recovering and could not speak.

When a nurse came over to me, I mouthed, “Where’s Mum?” The nurse took a while to write on my whiteboard, “Your Mum isn’t able to come and see you today as she’s not very well, but she sends her love”. I was devastated. I wanted to be at home to help her, but I was also selfish and wanted her to be with me. Yes, I’m a mummy’s girl. It was my first night without any visitors and it scared me.

The next day, Mum had already phoned, before I woke up, to say that she wouldn’t be able to come and see me, but her friend had arranged for another support dog to come and visit me instead.

I managed 6 hours without the ventilator that day!

I met Merlin, the Labradoodle, in the afternoon. He was very soft and friendly. He even licked my nose, bless him!

The reason there is a blurry area, my catheter was showing and didn’t want to post the original without editing. Not because I’m ashamed, it’s clear that I’d just had a wee!

Meeting Merlin did cheer me up for a while, but the man, who visited me during my first morning at Addenbrooke’s, the one who I didn’t have a clue as to what he was saying, came over to me with a group of people. He wrote on my whiteboard, “These are my students, do you mind if we examine you?” At this point, I just wanted all the examinations to stop. In the space of a few weeks, hundreds of different people had seen me, cleaned me, washed me, examined me. For someone who doesn’t like to be touched, I’d just had enough.

‘But how would that make me look if I refused a simple examination?’

I nodded and thankfully, it wasn’t evasive. It was a standard test where they bang that circle thing against your wrists, elbows and heels. Plus, the sharp end they run across the soles of your feet, they’re lucky they didn’t get a kick in the face because my pain threshold was still oversensitive!

After they left, I got very emotional. Nothing had been explained to me, I still didn’t know how I ended up in hospital. I still assumed I had a ‘bad chest infection’. It all just got to me and I wanted answers. It took me a long time to get the nurse to understand what I was saying, but she arranged for someone to come and see me to give me some answers.

Finally, hopefully within the next few days, I would know the truth!

If you would like to continue reading my story, then please head over to Learning to Breathe Again: Part 2